The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

M.E. myths

Because of the vast amount of inaccurate information being propagated about Myalgic Encephalomyelitis by various vested interest groups (helped immeasurably by the creation of the bogus disease category of ‘CFS’ in the 1980s as well as a number of vague and misleading umbrella terms such as ‘ME/CFS,’ ‘CFS/ME,’ ‘PVFS,’ ‘ME-CFS,’ ‘CFIDS’ and Myalgic ‘Encephalopathy’ etc.) it is not uncommon to read articles in the media composed ENTIRELY of such material. Articles which do not contain even one legitimate fact about the illness!

What follows is a list of some of the most common myths about M.E.:

MYTH: M.E. is a new illness that appeared for the first time in the 1980s MYTH: M.E. does not occur in outbreaks or epidemics MYTH: M.E. is an illness whose primary and defining feature is ‘chronic fatigue.’ MYTH: Myalgic Encephalomyelitis and ‘CFS’ are synonymous terms MYTH: People suffering with chronic fatigue have mild M.E. MYTH: All studies or articles which use the terms CFS (or ME/CFS, CFS/ME, CFIDS or Myalgic Encephalopathy) are discussing the same patient group MYTH: Fibromyalgia and M.E. are basically (or exactly) the same illness. M.E. is also basically (or exactly) the same illness as Lyme disease, Multiple Chemical Sensitivity Syndrome and Gulf War Syndrome etc. MYTH: M.E. is a mild illness from which every person will eventually completely recover and is never progressive or fatal MYTH: M.E. has been scientifically proven to be caused by psychological factors. M.E. is a 'mysterious' illness with many 'medically unexplained' symptoms and seems to ‘transcend the boundaries between the body and the mind’ like no other. No research exists which shows that M.E. has a physical or organic basis MYTH: M.E. is consequent from an organic (viral) trigger but the illness is short lived unless there are psychological and social factors which perpetuate the illness long term MYTH: It is only recently that researchers have finally shown that M.E. has a physical or organic basis MYTH: Only very mild abnormalities have ever been found in M.E. patients MYTH: All laboratory tests will always come back normal in M.E. patients and so there are no tests that can be done which can confirm a suspected M.E. diagnosis. Diagnosis is extremely difficult MYTH: M.E. is only a diagnosis of exclusion, a wastebasket diagnosis. It is not a distinct disease. MYTH: M.E. can not be diagnosed until after 6 months have passed, M.E. is a gradual onset illness MYTH: There are never any observable physical signs of illness in M.E. MYTH: Research into M.E. is well funded by government MYTH: M.E. primarily or only affects white, affluent and well-educated women MYTH: There are no children who have M.E. MYTH: Most people (or everyone) with M.E. has a ‘type A’ or perfectionist personality and this has caused or perpetuated the illness MYTH: M.E. can result from becoming run down physically or is the end result of high levels of stress, long term stress or childhood trauma or abuse MYTH: M.E. can be caused by the Epstein-Barr virus, glandular fever/mononucleosis, Q fever, HHV6 or Ross River virus MYTH: The term Myalgic Encephalopathy is more medically accurate than the term Myalgic Encephalomyelitis and so using the term Myalgic Encephalopathy is in the best interests of authentic M.E. sufferers MYTH: All those advocacy organisations (and individuals) which publicly state that M.E. (or ME/CFS, CFS/ME or CFIDS etc.) is not ‘all in your head’ are trustworthy and are working for the benefit all M.E. sufferers and are a good source of information about Myalgic Encephalomyelitis. MYTH: All those who state publicly that they believe M.E. to be a purely psychological or behavioural illness are basing their stance on a comprehensive and unbiased examination of the medical evidence and actually believe what they are saying. There is a legitimate scientific debate about whether or not M.E. is ‘real’ or if it is psychological or neurological. MYTH: It is the name CFS itself that is the cause of all the misunderstandings about the illness. If the name Myalgic Encephalomyelitis was renewed (for example) patients would automatically start to get the recognition and respect they deserve, more money for legitimate research and everything else they so desperately need MYTH: Once we have enough hard science behind M.E. – in particular a single diagnostic marker for the illness – things will improve for M.E. sufferers and M.E. will automatically start to get the medical recognition and respect it deserves. (The problem is only that we lack enough science.)

The truth is that every one of those statements is completely untrue despite how often they have been repeated to us and presented as ‘facts.’

The problem here is not a lack of scientific evidence, but that the evidence which exists is continually ignored by many of those in positions of power who are abusing that power to further their own vested interests. This pretence of ignorance on behalf of Governments (and others) has had devastating consequences for people with M.E.

The ‘CFS’ scam is tissue thin and the evidence supporting M.E. as a serious and potentially fatal distinct neurological disease is overwhelming. These facts are very easily discovered if one merely takes a small amount of time to look at the actual evidence.